Downers Grove Schools Unite to Support World Rare Disease Day

Students and staff at several schools in Downers Grove Grade School District 58 joined together Thursday in support of World Rare Disease Day.

Necia Munro and Jennifer Van Houtan, both of whose families are living with a rare disease or condition, partnered with Global Genes Project to spearhead a World Rare Disease Day awareness campaign at the two schools.

Global Genes Project is a leading global rare and genetic disease patient advocacy organization that works to build and unify a global rare and genetic disease community. The organization also strives to positively impact patients in their lifetime by offering programs designed to educate, empower, and support patients, advocates, foundations, and other rare disease-focused organizations.

“We feel this is an important cause to support, since one out of 10 Americans are living with a rare disease, and only 15 percent of rare diseases have organizations or foundations providing support or driving research,” Van Houtan said.

In the United States, a condition is considered “rare” if it affects fewer than 200,000 people combined, and approximately 50 percent of those affected by rare diseases are children, Van Houtan said.

Munro’s daughter Hallie, who attends Pierce Downer, was born with a rare condition called Heterotaxy, in which none of her organs formed properly. This occurs in just 4 of one million live births. The heart is always affected to varying degrees, but Hallie’s heart has taken a back seat to her myriad other problems that have required surgery, including her lungs, spleen, intestines and stomach.

Pierce Downer is also the home school of Noah and Laine Van Houtan. Noah was diagnosed with Late Infantile Batten Disease following 16 months of seizures with no known cause, and five months later, Noah’s sister Laine was diagnosed before her symptoms started. Typical early signs are loss of muscle coordination (ataxia) and seizures, along with progressive mental deterioration.

Noah and Laine participate in the SASED (Southeast Association for Special Education in DuPage) program at Kingsley, and their sister Emily is in first grade with Hallie.

Munro and Van Houtan ordered 1,000 blue denim ribbons—symbols for genetic disease awareness—to pass on to each child, faculty and staff member at Pierce Downer and Kingsley to wear on World Rare Disease Day. At Kingsley, students and faculty were also invited to donate $1 to wear jeans Thursday.

“This is a simple campaign, and a very important one to those in the rare disease community,” Van Houtan said.

During lunch the week of Feb. 25, the Kingsley student council also sold bookmarks created by students in the SASED multi-needs classroom during lunch.

Whittier School supported the cause, as well. The school’s Teeny Tiny Team, along with the student council, distributed ribbons and collected $1 donations to support Global Genes Day. Several teachers donated $5 to wear jeans Thursday, and students wore their favorite jeans to show that they care about RARE.        

For more information about the Global Genes Project, visit www.globalgenes.org. To read more of Hallie’s story and find out how you can help, visit www.helpinghallie.com.

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